When I started this blog my intention was to raise awareness of the number of disabled children living in poverty and the impact it had on their lives. I chose a challenge for myself that would provide a tiny window into the inconveniences that not having easy access to new and different things could bring. I chose poverty because it's explainable, it's preventable and everyone has some understanding of what it is.
The number of children living in poverty in this country is an outrage, the disproportionate number of those children who are disabled even more so. But that's not the reason I went to bed shaking with anger last night. That was because people with learning disabilities are still dying unnecessarily because they are simply not valued as highly as people who aren't disabled.
I know. That statement sounds aggressive right? No-one wants to believe this is true. Surely no one consciously values one person's life over another's? You know what I have to hope that no-one does do that consciously - but there is no .denying that people with learning disabilities are treated differently. Mencap have produced numerous reports about the inequalities in the way people with learning disabilities access healthcare. Between 2009- 2011 alone they had 28 grieving families come to them saying their relatives had died avoidably whilst in NHS care.
People with learning disabilities are victims of hate crime, and are disproportionately at risk of experience of physical, sexual, emotional and financial abuse. I could point you to lots of facts and figures about this but I won't. There's loads of evidence out there and I'd suggest you start here to find out more.
But sometimes numbers can get in the way of really feeling an issue. And today I want you to feel this. If you don't know anyone with a learning disability it's easy not to be outraged by the way they are treated - because you simply won't see it. It doesn't get much news coverage, there aren't any really famous people with learning disabilities (though there are some very inspiring people like my mate Scott Watkins), so why would you know?
Maybe some of you watched the panorama on Winterbourne View, and if you did you might remember some of the more disturbing scenes of violent restraint and bullying. I worked at Mencap when that programme was broadcast and I will never forget the stand up meeting on the campaigns floor the next day. People were distressed at those images - but we weren't surprised. Winterbourne view was a particularly bad example of treatment people with a learning disability have been describing to us for years. There are many wonderful people who work to support people with learning disabilities, brilliant, empathetic individuals who really care about what they are doing. But time and time again we hear about how systems put in place to protect people fail, how through neglect, disorganisation or malice people with learning disabilities do not get the treatment they should be able to expect. By which I mean the same quality of respect people without a learning disability receive.
Anyway - yesterday an inquest decided that Connor Sparrowhawk's death in a bath following an epileptic seizure was 'contributed to by neglect'.
I don't know Connor, or his family, but like many people who work in my sector I enjoyed dipping into his mother’s witty and honest blog about living with him. Her observations and experiences chimed with those of many families I've worked with, and the lead up to Connors admission into the assessment and treatment unit where he died felt all too familiar. Connor and his family were being failed long before his death.
And they continued to be failed after it. It has taken more than two years to get an apology - as if an apology is anything near enough when your child has died. The result of the inquest got some press today - not enough but some. And I can only hope that public attention leads to some real change in the way people with Learning Disabilities needs are assessed, planned for and met. But I fear that will only happen if we as a society stand behind people with a learning disability and their families. If we take notice when things like this happen and we shout about our outrage.
I agonised about whether to blog about this. This isn't my story it's Connor's, it's the story of his family and his friends and all the people who loved him. Except its kind of my story too - and yours - because do we want to live in a society where a young man's preventable death barely causes a ripple of attention? Where we are not all outraged by the fact that Connor is far from the only person to have died prematurely due to a lack of appropriate care - sadly (and if you're not angry now you never will be) he's not even the only person to have died in that bath.
I know.
That's why I went to bed and woke up still shaking with anger- there is just no world where this is ok.
I think it's important on this blog to say a couple of things. This is a personal blog - my opinions here are mine, not necessarily those of any organisation I represent. Also - I deliberately haven't gone into loads of detail about Connors case here - I'm not an expert on this case and it would be disrespectful to get it wrong. If you are on twitter I highly recommend reading @LBInquest where the whole inquest was live tweeted. The inquest findings are now on the Justice for LB site.
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